17 posts from May, 2011

Raise Your Awareness of ALS (Lou Gehrig’s Disease)

Posted May 20th, 2011 by

May is ALS Awareness Month. To help spread the word about this progressive neurodegenerative condition, which affects approximately five out of every 100,000 people worldwide, we wanted to tell you a little bit about our patients with ALS (amyotrophic lateral sclerosis).

Click to watch a full segment on the Heywood family from the nightly news show Chronicle, which airs on WCVB-TV in Boston

Due to our founders’ personal experience with this disease, ALS was the very first condition to have a home at PatientsLikeMe when we launched in 2006.  Five years later, our ALS members now represent the largest ALS patient population in the world, capturing 10% of all newly diagnosed patients in the U.S.

Here are some quick facts about ALS, as reported by our members:

What is PatientsLikeMe’s ALS membership like?

What are the top treatments?

What are the major symptoms?

What are ALS patients talking about?

Speaking of Lithium Carbonate, we are very proud of our patient-led research study on the drug that was published in the scientific journal Nature Biotechnology last month. The findings, which refuted a previous clinical trial, garnered a good deal of media coverage for not only showing the real-world effects of the drug (no impact on ALS disease progression was found) but also how patient-reported data can accelerate medical research.

Click to watch the full interview with PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discusses ALS research and the concept for PatientsLikeMe

Finally, to put a face on ALS, we’d like to share a current news story here in Massachusetts, where PatientsLikeMe is headquartered.  Former Massachusetts Governor Paul Cellucci talked about his ALS diagnosis for the first time this week on the nightly news show Chronicle.  We were honored to have been featured in the WCVB-TV piece, which included a segment on Stephen Heywood’s battle with ALS as well as an interview with PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Watch the full four-part piece (entitled “The Campaign of His Life”) to see how both Governor Cellucci and the Heywood family are fighting back against ALS.

One for All: Walking the Road Ahead with Both Patients and Industry

Posted May 19th, 2011 by

“You’re the patient who’s taking the medication. But industry can act almost like a friend who’s walking with you. And that relationship has never been the case in healthcare. Never.” – David S. Williams III

Last week, we kicked off our latest video series with an interview with President and Co-Founder Ben Heywood about the “long road” we’re all on together to change the way healthcare works for patients like you.

This week, Chief Marketing Officer and Head of Business Development David S. Williams III offers his perspective on how our industry partners can take part in this collaborative journey. Listen in to hear his thoughts on a new type of patient-industry relationship that is now possible thanks to social media.

Curious what other parties will share this “road” with us? Stay tuned for next week’s video interview with another member of the PatientsLikeMe executive team.